VSL#3 warning

the important thing about VSL is you need to work your system up... 8 pills on the first day sure sounds like alot. i know when i was taking capsules I started with 2...

i now take the 'DS' rx only variant, and with that i had to start extremely slow as well. VSL#3 isn't something that is a quick fix, you have to be on it for a while and your system should should start to show some results with time.

ditto on antibiotic puzzlement. unless the gas and bloating let an opportunistic infection get going, the antibiotics do not make sense.

while these are probotics, any brand of probiotics introduces lots of bacteria into your system. depending on exactly how you immune system is dysregulated, it could have overreacted to the new bacteria it saw invading.

are you really a doc?

so....did you have stool samples done before you started to take the antibiotics?

Yeah, probiotics can definitely cause gas....but it sounds as though you took way too many to start with.

What UC meds are you on at this time?

Sounds a bit extreme that you'd put in a complaint to the FDA...
q

Yea not sure what the FDA complaint would do, it's just a very strong probiotic, not even FDA approved. Any introduction of something "new" to any system can cause a bad reaction, especially when jumping in head first. That's why I ALWAYS start slow with any drug I haven't taken before - even the first time I took pred, they prescribed 40mg and I broke a pill in half to take 10mg the first day to make sure I don't have some insane reaction to it...I rather have a lesser insane reaction at 10mg instead of full-insane at 40mg.

I agree with the rest...antibiotics seems like a weird thing to start without knowing what the problem really is...antibiotics alone can cause UC havoc. I don't know what the solution is, but I'd question the doc about this line of reasoning.

I never had had issues with VSL, but I did have some problems with align so I stopped taking it....and that has a tiny amount compared to VSL (something like 3 billion compared to the 900 billion packet I was taking). But I started really slow with the VSL also, my first packet lasted me over a week.

Yeah, crap happens. All you can do is avoid vsl like the plague. At least you tried it and you know those strains arent for you. In the scd, the author says vsl is terrible for you due to the high bifido counts.

Anyway, i hope you can get better. Id honestly take the antibiotics and then replenish with yogurt, kefir, sauerkraut, or other fermented veggies/fruits. At least that way you'd start fresh and with natural whole food probiotics.

I had a very similar reaction to florastor. It was insane cramping and diarrhea about twenty times a day. Luckily, yeast probiotics leave our system in about three days so i was back to normal in a week. I will never take it again though.

Thanks. For those who have experienced badness from any probiotic, how long did it take to return to normal? What did you do about diarrhea? What about gas that smells like rotten eggs?

You definetly took too much to start out with. You should have worked your way up to the bigger doses. If the smaller doses would have made you feel bad then you would have known not to increase the dosage. You say that you have taken many other probiotics before and not had any problems but I guess you didn't realize that the VSL has 112.5 billion CFUS in each capsule - I'm sure way way much more than any of the other probiotics you took and I bet you didn't take 8 of those per day to start out with. VSL has proven to help many but, like anything else, it doesn't work in everyone and can make some worse. VSL works in me but a couple of other probiotics made me much worse.

I really think you panicked way too much in taking the antibiotics. Antibiotics can really mess your UC up. It wasn't the case that the antibiotics were just going to only kill off the strains in the VSL but were going to kill many other beneficial strains in your gut along with it.

You are quite correct and the politics of it are infuriating. There was a great article on this subject in JAMA a few summers ago. Consumers have only blind faithand the experiences of others to go on if companies don't do clinical trials. The VSL rep actually verified to me that they have no plans to do any safety or efficacy trials. So, since we only have each other's experiences, that's why sharing on forums like this is so valuable.

Also gave me bad cramps. Anyhow I suspect in my case excessive translocation,a guess. Also keep in mind that there are a few reports of systemic infection from probiotics.
Some probiotic strains might translocate more than others usually not good.

Many times with UC more is not better,or you need to build tolerance,moderation is safer until

you gut tells you it is safe to add more.
Old Mike

Well, quincy, way to kick a person when he's down. I am now in a full on bleeding flare. What I'd hoped to accomplish by sharing here was to gather advice and to warn people that harm may come to them if they do what I did.
I was not seeking to be attacked. Yes, I made a mistake. Yes, you are right and I did learn MY lesson.

I had been doing fine on Canasa until this VSL nightmare. Now I am back on Lialda and entocort, and I may be looking at prednisone

I tried VSL because of the few clinical trials in the peer reviewed literature, but now they are resting on their laurels and don't offer help to people hurt by the product. The bottle did not say to start with 2 capsules and work up. And, it shouldn't matter, since I was sick within 2 days of taking the product within the dosing range on the bottle. There is nothing on their site or in their papers about what to do when VSL makes a person bleed. Is there another probiotic which may offer strains to kill down the VSL strains? Will fasting starve the bacteria? Will they die off eventually? I haven't been this sick since I was diagnosed and it is nerve wracking.

Another thought is could it be die off? It maybe could be bacteria dying rapidly like the Vsl knocking it out and you getting the symptoms from it. I know they can be similar to the symptoms of our sickness. Especially if you took a way high dose right away. I wonder if it would taper off and start to help you feel better after that period. I agree with some saying to work your way up as well. Probiotics can be very strong!

DocGP,
I understand how upset you feel. I had a pretty bad experience with VSL3 too when I started it. I did not take 8 capsules but 4 in one day (2/2 times in one day). Very big mistake! Like you, I have taken at least 10 different probiotics before and have never had any dramatically bad experience, maybe a little more gas for a few days. VSL3 was different. I had a lot of cramps, gas, spasms, diarrhea... I had to stop it completely for a few days, to let my body to calm down, then I took only 1 capsule per day for a few days and still had some issues, just in a much more mild form. After my body got used to it, I added the second capsule, but I have never took more then 2 capsules in one day anymore.
Similar problems caused probiotic Saccharomyces boulardii (like Florastor). My body just did not like it at all.
I do understand how frustrating it can be, to take a probiotic that should help you and instead you got into a bad flare. I do not think the bleeding is actually caused by VSL#3, what probably happened is VSL#3 caused a lot of diarrhea and cramps and irritated the walls of your colon even more.
I would not write to FDA about it. I would not want them to take this probiotic off the market. They already took a wonderful probiotic Mutaflor away form us. VSL# did not agree with you, but it helps a lot to many people with colitis. Please, do not do it!
VSL#3 is the strongest probiotc on the market. I personally do not think it is the best, because it is not enteric coated to insure the delivery to the small and large intestines, but I do believe it is a very important supplement to many people with IBD in the USA.
I hope you will feel better soon.
When you get the symptoms under control, try Dr. Ohhira's probiotic. They are very gentle, fermented for 3-5 years (depends on the formula), to insure that the different strains of the bacteria work synergistically and do not cause gas, cramps, diarrhea...
My best wishes to you!